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Thursday, 30 June 2011

I know that it's a little early to be re-posting material, but today is Canada Day, and this post seemed especially appropriate. I'll be back on Monday with new material. Happy Canada Day, and have a great weekend!

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Thanks to dedicated staff in Canada's health care system, I am both an AVM *and* a stroke survivor. I'm a very lucky person, to be where I am right now.

My AVM Story

I sometimes feel like I spend a lot of time defending Canada’s health care system. I know that it’s not perfect. I can tell some stories of some real atrocities that have happened to people I love, in fact.

But it was there for my mother, right from the time that she was diagnosed with cancer to her death. She was treated, as far as we as we could tell, to the best of the doctors' ability, with respect and dignity. We were treated with respect by hospital staff as well.

The medical system has always been there for me as well, in spades. Like I said, I've been very fortunate.

I had my first stroke in the middle of a job interview in British Columbia. I was twenty-two at the time. I was rocking that interview. They wanted a coordinator for a symposium on youth violence, and I could tell that they liked me (I ended up getting the job, actually).

But it was not to be, because in the middle of the interview I got an incredible headache that came on like a train – fast and forceful. “So this is a migraine,” I thought, faltering over my words. I had to stop and explain what was happening. Someone on the interviewing panel gave me some Tylenol, and I managed to finish the interview, but at the end of it they wouldn’t let me go until I’d promised to go to straight to the doctor.

I didn’t protest. I could feel my neck getting stiff. “So this is meningitis,” I thought.

I’d only been in British Columbia for a couple of months. I’d just put my application for BC health insurance in the mail that morning. I walked into the town health clinic, put my Ontario health card down in front of a receptionist who didn’t know me from Adam, and said, “I think I have meningitis.”

Five minutes later, I was in a doctor’s office.

Five hours later, after an ambulance ride to the nearest city, I was checked into the nearest hospital. I’d had a CT scan and a lumbar puncture and I was scheduled to be transferred to a larger, more specialized hospital in the morning.

Five days later, I’d had an angiogram and I’d had been diagnosed with arteriovenous malformation, or AVM (check the Glossary on the About Me page for definitions of unfamiliar terms). A consult had been set up for me in an AVM clinic in a Toronto hospital, and I was cleared to fly home to Ontario.

Five months later, I’d been seen in the AVM clinic in Toronto Western Hospital twice. The doctors had decided on a course of treatment based on another angiogram: embolization to reduce the size of the AVM, and then a craniotomy. The surgery hadn’t gone as well as they’d hoped: A small segment of AVM could not be treated, and I’d had a stroke that had significantly compromised my left side. My treatment team was arranging in-patient rehabilitation at a facility closer to home, so that my father wouldn’t have to do so much driving. They were just waiting for seizures to stabilize before they sent me.

Penetanguishene General Hospital kept me for as long as they could, and then sent me to Ottawa Rehabilitation Centre, which kept me for as long as they could. My in-patient rehab was seven months in total. I still see a seizure specialist (and, because I didn’t like the first one to whom I was referred, I asked if I could switch, and I was accommodated).

When It All Comes Down to Money

There’s a chance that I wouldn’t be here if the medical system hadn’t been here to support me the way it had. My family would not have been able to afford my AVM surgeries, let alone my aftercare and rehabilitation, if we’d lived in country without universal health care. As I said, the system isn’t perfect...and I really feel for people that have had a bad outcome because they've been put on a waiting list or because they've had to sit in an ER too long. That absolutely shouldn't happen.

But I can’t imagine living in a country where people sometimes go without treatments that they need simply because they can't afford it.

Wednesday, 29 June 2011

On the heels on his June 3rd show, in which he made several crude and negative remarks about homosexuals (including that he’d “stab” his son if he turned out to be gay”), Tracy Morgan's Saturday night show included remarks about “retards” and a “cripple” that he’d once dated.

Surprising Support for Tracy Morgan

The comments on this story, if you have time to go through some of them, are fascinating. I looked at the first 50, just to see peoples’ reactions to the story. I was surprised to see so many that felt that Morgan coming under fire for his comments about homosexuals, and now the comments on people with disabilities, is the sign of a PC culture gone mad. The term “First Amendment rights” was mentioned frequently. People wondered why these groups can’t take a joke, about what comedy is going to have for material if groups keep getting offended by every little joke about them, and say that if you don’t like Morgan’s humour, don’t go to his shows.

Well, if I ever did have a desire to go to one of Tracy Morgan’s shows, it’s gone now. And I don’t offend easily when it comes to comedy. My sense of humour is pretty dark, and I’m the first to laugh at a good joke about my disabilities or at disabilities or general.
Notice I said a *good* joke. There are witty, well-written, well-executed jokes…and then some that aren’t so much any of those things, but still funny…and then some jokes that are none of those things, and cruel to boot. The jokes that Morgan made fall in the last category, and it’s really disappointing to see that so many people consider them “humour”.

However, Comedians Should be Equal Opportunity Offenders

I did find one comment particularly interesting, though. One woman believed that Morgan shouldn’t have made the remark he did about people with disabilities, especially children, because they are “innocent” and have enough challenges to live with (as opposed to the intrinsically not-innocent children without disabilities that face no challenges, I guess). I don’t like this line of thinking. It’s amazing to me that the stereotypes about people with disabilities show up even in discussions of whether or not it’s “okay” for comedians to make offensive jokes about them. I’m not prepared to give Tracy Morgan kudos for declaring them “joke material” and treating them just like everyone else, though; I doubt he had that agenda in mind with his comment about “retards”.

If you happen to be one of the people who commented, on that article or on others or in your day-to-day conversations, that Tracy Morgan was inappropriate and needs to apologize for his most recent comments…thank you. I think that sometimes media figures forget just how powerful their ability to shape peoples’ perceptions are.

Sorry, Tracy. I used to be a fan, but I won’t be tuning in to “30 Rock” anymore.

Tuesday, 28 June 2011

Agency supports are sometimes necessary to assist people to "put the pieces together"...

When I was getting my certification to work in the field I do now, several of my teachers seemed (to me) to have a bias against social services agencies stance that infuriated me. At that point, I had volunteered for several years for a social services agency of whose I was very proud. I resented the suggestion that its work was actually setting people with disabilities back instead of moving them forward.

Still a Need for Social Services Agencies...

I understand now that my professors weren't necessarily biased against social services agency supports, but were rather trying to get us to question a widely-held assumption that only agencies and “workers” can provide people with disabilities with what they need. The opposite is true. There’s no reason why the community, its members and social services agencies that haven’t traditionally provided services to people with disabilities can’t provide support that agencies like the ones for whom I've worked and volunteered traditionally have; it’s just that the wall of, “Oh, he/she Is one of *theirs*” has always stood in the way. Agency involvement sometimes keeps the walls to true inclusion in communities standing.

However, no matter what vulnerable group you’re talking about, the nature of our society dictates that there are always going to be people out there who need support who may not be able to find it (or enough of it) from family or friends or other informal systems. The world still needs social services agencies and the supports that they provide.

...But Also a Need for Change

And despite budget cuts and legislation and other changing realities, agencies have to find ways to provide effective and thorough support, or we hear terrible stories like the following. Just a warning; I found this story very difficult to read. But please read it, especially if you live in Canada. People need to know just how easy it is for families to fall through the cracks, and just how little a voice children (especially children with disabilities) can have regarding what they need when there are lots of other needs in a family.

It’s almost physically painful for me to think about what the days after her mother’s death must have been like for this poor young woman. Alone, already significantly neglected and unable to hear because her hearing aids weren’t working, not understanding what had happened because of Down’s Syndrome, trying to feed her mother’s body and administer her medication…it’s a heart-breaking story.

Some Things Should Never, Ever Happen

And a shocking one. Several social services agencies from various British Columbia government Ministries were involved with this family. There’s no way that something like this should have happened, ever. The British Columbia children’s watchdog has already made a report to the Premier about her recommendations based on this incident, including better communication between Ministries when it comes to supporting children with disabilities in the province. Hopefully this will prevent children from falling through the cracks the way this child did.

There are lots of people who support children with disabilities who do wonderful work. They need to be a part of system that allows them to do that work effectively, so that something like this never happens again.

Monday, 27 June 2011

Just for a bit of a change of pace, let's discuss one of my favourite movies: Return of the Jedi.

Yes, Return of the Jedi

I can just see my friends cringing at the fact that I've found a way to work Star Wars even into my disabilities blog, but I promise that I can do it legitimately. It's not even that difficult.

Have you ever thought about the fact that the two people around whom Return of the Jedi basically revolves both have major disabilities? Other characters play significant roles, of course. But in the end, the fate of the galaxy comes down to a man breathing through a respirator and a man with a prosthetic arm duking it out Jedi-style in the Death Star's throne room.

(For those who have forgotten, or never cared to know, Darth Vader chopped off Luke Skywalker's forearm during a fight in The Empire Strikes Back. Luke wore a prosthetic arm from that point on; it never seems to affect how he functions or anyone else's perception of him. In fact, he does some *awesome* lightsaber work in "Return of the Jedi".)

I admit it. I'm a Star Wars nerd. You have no idea how excited I was when this idea that Vader and Skywalker had major disabilities in Return of the Jedi occurred to me.

Hollywood Stereotypes of People with Disabilities

It's interesting in Vader especially. There's a tendency in Hollywood to stereotype people with disabilities as good and noble, courageous, empathethic (and, especially for people with intellectual disabilities, childlike and innocent). Darth Vader is none of those things. Luke finds good in him him eventually...but one of our first exposures to Darth Vader in the original Star Wars movie involves him almost killing an employee who disagree with him. I wonder if we're maybe also, at least in part, so fascinated by the Dr. Gregory House character on FOX's "House" because he has physical disabilities and yet is such an obviously miserable person; he also goes against the stereotype.

Think about some of the portrayals of people with disabilities that you've seen in the movies and on television. Are they well-rounded characters? Or stereotypical?

Sunday, 26 June 2011

I know that some people really don't like to be what they consider "politically correct".

A boyfriend (now an ex-boyfriend) and I were talking over lunch one day. We hadn’t been together all that long. He was telling me a story about his job as I ate my hamburger.

“It was so retarded,” he concluded. (He wasn't a fan of modifying to language to be what he considered "political correct") “Hey, are you okay?”

I’d choked on my burger. “It was what?”

“Retarded,” he said. “No good?”

“Not if you expect to go to any work events with me or meet any of the people I support,” I said. “Hell, meeting my family’s pretty dicey if you’re going to go throwing the R-word around,”

“It’s just a word,” he said, looking confused.

“Not in my line of work, it isn’t,” I said. “You’ll make the people I support furious, or you’ll make them cry. My co-workers will wonder what kind of jack-ass I’m dating. And the R-word has been dirty in my family for as long as I can remember.”

“I can be good," He smiled. “But, seriously…it’s just word.”

You don’t get it, I thought.

Not a Matter of Being Politically Correct

Being politically correct is one of the least of my considerations for choosing my language. Many of my friends who dislike the "politically correct language" may disagree with me on that, but they're not here, so...

I think that speaking respectfully about people can look to some people look like an over-use of politically correct language, but that it goes deeper than that.

I’ve had the “just a word” argument many times, and not just over “retarded”. I went through a period where I also argued that “slut” should be purged from the English language, on the following grounds:

It’s ugly.

It expresses a double standard that while it’s socially okay for men to have sex with many women, the reverse is not okay.

Women and girls call each other sluts without being aware of what it really means.

Calling a woman a slut, regardless of the intended meaning at the time, is a way to make a woman feel bad about herself.

Eventually, I got over wanting to ban “slut”. I discovered that I had the power to decide to decide whether the people who called me “slut” were going to make me feel like a slut or not. Their word made no difference; how I chose to react to their word did.

It really is just a word.

I took that lesson and applied it to other words that people would call me later on: “disabled”, “handicapped”, and “challenged”.

Yes, “retarded” is just a word. “Mentally retarded” is actually diagnostic criteria. “Retarded” means “slow” and, in the context of “That’s retarded”, isn’t necessarily meant to be a comment at all on people with intellectual disabilities. I realize all these things.

When It's Not Just a Word

However, "retarded" is one of those words, like "slut", that I choose not to use. Over the years, “retarded” has come to have a lot of negative connotations pertaining to people with intellectual disabilities. It’s become a way of putting people with those disabilities down, and part of the movement to institutionalize children with intellectual disabilities that resulted in widescale suppression of even their fundamental rights and freedoms. I don't use it because it's "politically correct" not to use it; I don't use use because it's a really emotionally loaded term for many of the people that I support.

As is the word “retard” which comes from “retarded”. If you truly, truly, believe that words are just words, respect people with intellectual disabilities and their ability to make their own decisions about what words they’d like used to describe them, and do an informal survey for yourself. Whenever you come across a person with intellectual disabilities (I use “intellectual disabilities”, by the way, out of habit more than anything else. The Self-Advocates Council of the national branch of an agency for which I once worked said that they preferred "intellectual disabilities", and I've just gotten used to that terminology), ask him or her: “Is it okay if I call you a “retard” or do you prefer “retarded person” or something else?”

Or ask women, “Is it okay if I call you a “slut” or do you prefer “whore” or something else?”

You get the picture. If you really believe that words are just words, put your money where your mouth is. No agenda of politically correct language...the respect of finding out someone's personal preference...and going by it.

Politically Correct or Personal Respect...What Do You Think?

Do you use the words "retard" or "retarded" in your daily life? Would you use them if if a person with intellectual disabilities was in the room, or ask that person if they'd be okay with you calling them those names? Why or why not? I'm genuinely curious...please leave me a comment...

I really don’t see the point of taking great pains to make a society accessible and inclusive if we’re then going to insist on using language that’s offensive to people (and this goes for language that may be offensive to any person, not just people with disabilities) just because we feel like we should be able to.

Friday, 24 June 2011

In my previous post on disability sensitivity, we talked about some general practices to keep in mind when interacting with people with disabilities. I’m going to round out the list with tips regarding specific types of disabilities in specific situations.

Disability Sensitivity Tip #6 - People Who Use Wheelchairs

Keep the following in mind when you're with a person who uses a wheelchair:

• For extended conversation, get down to his level to talk to him by sitting in a chair yourself. It’s uncomfortable for him to have to look up for that long.
• When planning outings, check that the places that you plan to go on outings before you go are accessible.
• If you are pushing her chair, let her know when you’re about to start pushing. Try to let her know what you’re doing as you’re pushing (for example, tell her if you need to tip the chair back to get up onto the curb). Be aware that pushing someone smoothly takes practice. It's not as easy as it looks!

Disability Sensitivity Tip #7 - People with Hearing Disabilities

Keep the following in mind when you're with a person who is hard-of-hearing or deaf:

• Make sure that your lips are always visible. Speak directly to the person. Make sure you are always looking at him, and use simple sentences. Avoid activities that affect your speech or make your lip movements difficult to read. Do not like chew gum or smoke.
• Speak in a normal tone. Shouting isn’t going to make you any easier to hear. Concentrate on speaking clearly.
• Gently touch her on the arm or shoulder to get her attention before you start speaking.
• Don’t worry about using terminology like, “Did you hear the story about…?” Despite popular belief, most people with hearing disabilities are not offended by these colloquialisms.

Disability Sensitivity Tip #8 - People with Visual Disabilities

Keep the following in mind when you're with a person who is visually impaired:

• As you approach her, identify yourself and any people who are with you. Introduce her to the people who are with you.
• Ask him if he'd like your help to get around. If he says yes, let him hold your arm and lead you. Let him know obstacles he that is approaching by using the clock face (“Chair at 2 o’clock). Tell him approximately how many steps away the obstacle is.
• When supporting someone, provide her with a quick overview of a room as she enters. Let her know who is in there, and tell her about potential obstacles and approximately where they are. Tell her about any steps in the room and approximately where they are.
• Don’t worry about using language like “Did you see that?”. Most people with visual disabilities aren’t offended by these colloquialisms.

Disability Sensitivity Tip #9 - People with Cognitive Disabilities

• Don’t “talk down” to him. He’s not a child, and enjoys talking about the same things you do: Weekend plans, relationships, jobs, etc.
• Assume competence. She can make her own decisions, unless you’ve been told otherwise. This is another assumption that you should always make.
• Rephrase or try to communicate in a different way if she doesn’t understand what you’re saying. Sometimes just showing her what you mean works well. If you can’t understand what he’s saying, ask him to show you what he means.
• Allow lots of time for communication so that she doesn’t feel pressured.

• Recognize that people deal with mental conditions in varying ways. Ask what would make her feel most comfortable.
• Remain calm in crisis situations. Ask if you can help and be supportive. Find out if someone should be called. Some resources say to find out if there’s a medication that the person should be taking. For personal reasons, I am very reluctant to administer medications or suggest that someone take medications (unless it’s a life-or-death situation, such as an EpiPen for clear signs of anaphylaxis after food consumption or a bee sting) unless I’ve been told about it first, without speaking to a doctor or a pharmacist first. Think about what your position is on this.
• Assume competence. Having a mental condition does not mean that an adult can’t make his own decisions.

The 10 tips disability sensitivity tips that I've talked about are just a short list of how to make everybody in our society feel as safe and comfortable as possible...and that's the ultimate goal of a culture of inclusion, where everyone feels welcome.

Check out the following links for a *very* comprehensive discussion of disability sensitivity:

Thursday, 23 June 2011

This AVM survivor community has really used the power of social media applications such as Facebook, Twitter, and forum and blogging applications to bring people together; it's quite impressive.

I hope that the link to this AVM survivor community will be useful to those with AVMs or those wanting to learn more about them. I will soon do a post on other AVM support community websites and support resources.

Wednesday, 22 June 2011

I don’t remember waking up and thinking, “I can’t move my left side”. For a long time, I thought that the stroke occurred while I was on the operating table. It was a couple of years later before I realized that it actually took place several days later, and not in the area where the residual AVM was. There was a seizure involved (which I do remember), and then a gradual realization that there were parts of my body that just didn’t move right anymore.

A Brain That Doesn't Realize Parts of the Body are There

“Trying to lift a limb affected by stroke is like trying to lift a sleeping cat,” said one of my nurses. That meant nothing to me at the time because my family had only had dogs for pets and I’d never tried to lift a sleeping cat. (I have now, which gives me an even greater respect for the nurses who literally had to move my limbs for me to get me dressed and undressed each day). All I knew was that I felt like my left side was dead; my brain didn't realize that my left arm and leg were there. I tried to think with all my might, to get more than a little bit of movement out of my left arm, leg, foot or hand, but none of them wanted to cooperate. My leg would only rise a couple of inches of inches off the bed, and stop. My foot pointed a little bit, but my toes wouldn’t wiggle. I couldn’t pick anything up; my fingers made a loose fist, but my thumb lay flush across my palm and refused to move. I came to a great appreciation very quickly of just how much I needed my thumb to do just about anything. However, I was determined that the stroke wasn't going to prevent me from returning to my summer job in July.

Dealing with the Stroke Brain

I don’t remember how I managed to eat, not being at all ambidextrous (well, truthfully, I hated the hospital food, and only ate and drank enough so that they’d keep a catheter out of me). I imagine that the things that I do now (open cracker packages with my teeth; saw my food with my knife; I now make a standard disclaimer to new friends that dining with me isn’t always a graceful affair) were already done for me. My signature became acceptable, but I eventually sent my looseleaf notebook and pens home with my father. I was not going to be doing any real writing for a while.

Physiotherapists would come and do basic range of motion exercises with me, and help to get in and out of a chair so that I could spend a couple of hours out of bed each day. Even doing that was exhausting. I spent my days mostly sleeping and reading the magazines that my father brought me (“There’s nothing worse than not having something to read,” he’d say to me as he’d deposit the latest issues of “People”, “US”, and “Entertainment Weekly” on my bedside table.)

He also brought me the latest “Harry Potter” book right after my stroke. There was no reason to believe that I couldn’t handle it. We’d established that the stroke hadn’t damaged the “machinery” in my head that would make life *really* difficult to live. I could swallow, so my food didn’t have to be pureed (and when I saw the pureed diet in the rehab hospitals, I thanked my lucky stars for that!) I could talk, and I didn’t appear to be experiencing deficits in my speech. My vision didn’t appear to be impaired, although I’d have to have further testing on my visual field done.

The Scare of My Life

However, when I started to read the “Harry Potter” book, I was stunned and terrified. I found that, while I had no problem reading and understanding the lines of text, I couldn’t link them together. I felt like each time my eyes dropped to the next line, I had skipped a line and jumped out of place in the paragraph. But there was no way to find the line that fit, because I *was* reading the line that was supposed to fit; my mind just didn’t recognize it.

My father was in the room with me. I started to cry. “I can’t read,” I said. “The lines don’t make sense.”

“What?” he said.

“This line doesn’t come after this one,” I said, pointing to a paragraph in the book. “My mind doesn’t understand it.”

I’m sure my father had no idea what I was trying to say, but he got a nurse in there and between the two of them they got me to accept that this could just be a temporary side effect of the surgery (which it was). I just had to be patient and take it easy and do the best that I could.

Which would become the theme of the next several years.

If there's anything truly fortunate about the way things went with my AVM, it's that I found out about it by having a small stroke that caused no damage. Yes, ultimately I had a larger stroke that caused significant damage; but if I hadn't had that smaller, warning stroke, the same thing (or worse) could have come from seemingly nowhere in a situation where other people might have been hurt (like, when I was driving a car or holding a baby). This way, I chose to go into surgery knowing that something like this could happen...and at least I won't have another stroke from an AVM. I rolled the dice on a surgery with risks...this is what I got. And all things considered, I came out pretty good. Plenty of people have come out of the same surgery in a lot worse shape.

Tuesday, 21 June 2011

Last night, as I was flipping through the channels I happened to catch an episode of “Law and Order: SVU” that dealt with intellectual disabilities. I’m always interested to see how the media portrays people with disabilities, so I decided to watch.

People with Intellectual Disabilities and Sexual Assault

“Law and Order: SVU” is always interesting, but it’s rarely easy to watch. Some episodes are easier for me to handle without wanting to burst into tears than others, but it’s the only show on television that makes me consistently ask myself, “Can I really handle this?” Last night was no exception; the show was about a young woman with Down’s Syndrome who was pregnant as a result of a rape, and the numerous issues that come out of that particular situation.

People with disabilities (in general, not just intellectual disabilities) are, unfortunately at much higher risk of sexual assault. The California Coalition Against Sexual Assault reported in 2001 that 15 000 to 19 000 people with developmental disabilities were raped per year (California Coalition Against Sexual Assault, “Serving Survivors of Sexual Assault with Disabilities”, 2001). I couldn’t find more current statistics, but I shudder to think what they are now.

The Importance of Having the Difficult Conversations

The statistics I quoted above scare me, but they also strengthen my resolve not to avoid difficult conversations. I’m not a mother, but I’ve had enough conversations about sex with people with intellectual disabilities, people operating at a teenage mentality or lower, to know that it’s not fun for anyone involved. It’s not comfortable to have to ask people if they know what sex is (and to sometimes have to explain) or ask if they’ve thought about birth control. But damn it, it’s necessary. The people I support may be, mentally, in their teens or younger. But they’ve got adult bodies, complete with adult sex drives. They need to be prepared for the possibility that they may choose at some point to have consensual sex.

They need to also be aware that not all sexual contact is good. They need to know the difference between “good” and “bad” touch, and what they need to do if someone ever touches them in a “bad” way. Because, as much as we’d like to be able to protect people with intellectual disabilities from all the bad that’s out there in the world, it’s just not possible to do so, or responsible to believe that it can be done forever. The harsh reality is that eventually the parents of these adults with disabilities aren’t going to be there to protect their kids. And while that doesn’t mean that the adult with disabilities is necessarily going to be out on the street, having as many skills and as much knowledge as possible – including at least a basic awareness of issues around sexuality and sexual safety – is going to make the transition to whatever comes next all that much easier.

It’s much easier to have these difficult conversations than to have to hear, as the mother on the SVU episode did, that your daughter with intellectual disabilities is pregnant as a result of a rape. In the name of their safety, people with intellectual disabilities need education appropriate to their developmental level (not just once, but again and again) about sexual safety just as much as people without disabilities do.

I’m not going to even get into right now some of the other issues that the “SVU” episode raised: competency and capacity assessment, the debate about whether people with intellectual disabilities can raise children, who should get to decide what when it comes to individuals with intellectual disabilities...but you can bet that I’ll revisit these things at a later date.

Please remember, though, that I don't claim to have all the answers...when you get into questions like these, nothing is black and white and sometimes it seems like the "right" answers change by the day. If there's ever anything that you'd like me to talk about in a more in-depth manner, or do more investigation into yourself, let me know; I'll either do some more research myself or point you to resources where you can find out more.

Monday, 20 June 2011

Last week, in my post on invisible disabilities, I started to touch on disability sensitivity. I'd like to talk about it some more today.

We're Not All Good Teachers

When my sister and I were old enough, my father took it upon himself to teach us both how to drive our family’s standard- transmission pick-up truck. I, the eldest sibling, was the first student.

I came back from our first session crying. My sister, a little more “take no prisoners” at that time in her life than I was, drove back to the house, dropped Dad off, and told him she’d learn by herself on our back road.

My father was well-meaning, but had been driving vehicles with a standard transmission since he’d gotten his license. He couldn’t understand why the process didn’t feel as intuitive to us as it did to him. I couldn’t get the timing right and kept stalling the car; Rachel kept making the truck “bunny-hop”; he knew what he wanted us to do, but it was so second-nature to him that he couldn’t explain it, and just got frustrated with the whole teaching experience in general.

I wonder sometimes if people who feel somewhat lost about how to act around people with disabilities feel like my sister and I did. Workers in the disabilities field get so used to talking and thinking in a certain way about what we do (in part due to current thought about disability sensitivity) that sometimes I think we struggle to remember exactly why we think that way, and struggle even harder to explain it to other people.

I’ve put together a list of ten disability sensitivity tips. Practicing them is now “second nature” to me (partly because I can now speak from “both sides of the fence” now), and I've tried to clearly explain why, to me at least, doing so is so important. We’ll cover five of them today.

Disability Sensitivity Tip #1: Keep Language Positive

Over the years, I’ve become the first to argue that negative words damage us only as much as they let them. But a society that’s made a commitment creating a culture where all people can feel included, particularly when some disabilities preclude people from understanding the terminology used about them and advocating for the use of different terminology if they choose, needs to be aware that words shape perceptions (whether we like it or not). In this blog, I’ve been using “people first” language as part of my practice of disability sensitivity; it doesn’t always flow as well, but it emphasizes that there’s more to the person than their disability. See this link for more information on people-first language: http://www.asha.org/publications/journals/submissions/person_first.htm. Speaking this way feels a little unnatural at first, but soon becomes easier to do without thinking.

Advocacy groups are trying to reclaim some of these words, but it’s good advice to avoid them altogether: cripple, gimp, victim, retard/retarded, spastic/“spazz”. See the above link for a more complete list.

Disability Sensitivity Tip #2: Ask Before Touching Someone

At a barbecue, I went to get out of my lawnchair and commented that it was a bit of a deeper chair than I was used to. The next thing I knew, someone was trying to lift me out of the chair by my armpits. The sense of physical invasion made me furious, and ruined my evening. It’s not like I wasn’t used to getting assistance from people, but I was used to being asked whether I wanted it first, and I was used to my nurses telling me exactly what they were going to do before they did it.

I realize that this is an area that makes people especially uncomfortable. I was uncomfortable with it, back in my pre-stroke days. What *do* you do when it looks like someone need help? Do you risk offending him by giving it and implying that you don’t think that he's capable? Or do you risk offending her by not giving it when it turns out that she really does need it?

Simple answer: Ask, "Can I help you? Do you need some assistance?" Ask especially if you’re going to have to touch the person, because many people assume that it’s just okay to touch someone with a disability without asking. If you ask me if I need help and I say “Yes,” tell me exactly what you’re going to do.

(And if I don't thank you afterward for helping me, *then* you can slap me around a bit. I'm kidding. Don't ever do this. To anyone.)

For some disabilities, giving physical assistance without being trained can result in serious injury to you or the person you’re trying to help. Don't worry about disability sensitivity in these cases. If in doubt about whether you can assist safely or correctly…err on the side of caution and go find someone who can.

And if you ever ask someone if they need help and they’re rude to you…be satisfied with knowing that you a nice thing, and know that you’ve just come across a rude person. Even people with disabilities can be rude. Perhaps the person was just having a bad day, and it's too bad you got caught in the crossfire...but you did a good thing.

People are fascinated with canes, wheelchairs and walkers. They’ll sit on a friend’s walker, or lean on their chair, or pick up a cane and just start playing with it. That sort of thing doesn’t bother some people. It didn’t bother me when I was in my wheelchair (but I didn’t really like my wheelchair.) But pick up my cane and start playing with it without asking my permission – that really bothers me.

I used to think that I was just quirky about this, until I read some books about disability sensitivity and etiquette that said that it really is a social faux pas to touch, lean on, or play with someone else’s mobility aid. These are the things that help us get around in the world – they’re often fitted specifically for us, and they’re very personal. When I’m out walking with my cane, it feels like an extension of my arm, so much so that I barely notice it.

If you’re tired and want to lean on someone’s wheelchair (or sit in it, if they’re not), or you’re curious about their cane or walker and want to look at it: ask them if it’s okay before you do it.. They may not be comfortable with people touching something so personal without their permission.

Disability Sensitivity Tip #4: Talk *to* the Person, Not Around Them

There are few things more annoying than having people ask a question about you that you can answer to the person standing next you. And yet, it often happens to people with intellectual disabilities. I get routinely asked when I’m out in restaurants with people I support, “And what would he like?” I make a big deal of asking the person I’m with, “What did you decide to have?”, just to get a point across: He knows what he wants. Ask *him*.

My friend Martin experiences this as well. He had a stroke after a car accident, can’t speak very well and is in a wheelchair. He’s “all there” – he understands everything that’s said around him, and he can answer. But people don’t give him the chance to. His physical disabilities cause people to assume that he doesn’t understand what’s being said to him. They talk about him, to whomever’s with him – “How’s Martin today? And what does Martin want to eat?” – and barely look at Martin.

Even if you don’t think that a person with disabilities is going to understand, address questions about her to her. Speaking directly to the person isn’t just the polite thing to do, but it’s the best way to communicate with someone with a hearing impairment (and who knows? That may also be an issue for her.) If there’s a person with her and she doesn’t understand the meaning of your words, the other person will step in if assistance is needed. If there isn’t someone there and she appears confused, ask her if she understood, and repeat your question. If you can’t understand her response, tell her that you didn’t understand and politely ask them to repeat her question. If you really can’t open a line of communication, ask her if it would be okay if you got someone to help you to understand what she needs. Practicing disability sensitivity in this way goes a long way toward making people feel acknowledged and like people value what they have to say.

It’s really all about polite treatment, which is what you’d give any person. Why should a person with disabilities be any different?

“Service animals” are not just guide dogs for people with visual impairments anymore. Dogs are being trained to assist people with physical disabilities to live independently, to support people who have severe panic attacks, and to even help keep people safe when they have seizures or blood sugar disturbances. They undergo special training through agencies and again when they are matched with owners, so that owner and dog function as a close team. The dogs are working when they are out in public and can’t be disturbed.
Unless you have its owner’s permission, NEVER:
• Pet a service animal
• Feed a service animal
• Allow your own animal to get too close to a service animal
• Otherwise distract a service animal while it’s working.

Disability sensitivity is easy to learn and important to practice. We'll continue to talk about it later this week.

Sunday, 19 June 2011

I watched “Awakenings” this weekend, which is a movie about people with multiple and profound disabilities. It’s one of my favourites, though not one I watch very often.

"Statues"

“Awakenings” tells the story of Dr. Malcolm Sayer (based on Dr. Oliver Sacks) and the success of his idea to administer the drug L-Dopa to a group of people that had survived encephalitis. The people in question were hospitalized for essentially being “living statues” – unable to move or communicate, unresponsive to most stimuli, and assumed to lack capacity to respond to the world on even the most basic level. High dosages of L-Dopa caused an “awakening” in these “statues”, bringing them back (albeit briefly) to a place where they could interact fully with the world again.

"Feed and Water Them"

I know from reading reviews of “Awakenings” (the movie) that the science behind it is representative of what went on in Sacks’ actual experiments. That’s interesting, but it’s not what was has me thinking that I would like to read Sacks’ account of his work (also called “Awakenings”); I’m more interested to see if his motivation for starting work with these patients was the same as the Sayers character’s in the movie. Sayers, played by Robin Williams, observed signs in the “statues” that convinced him that there were people inside them, despite their profound disabilities, that could be reached: they caught objects, they exhibited purposeful behaviour, they responded to music (but each one to a different type of music) and to touch from others. No one had ever noticed before, because no one had taken the time to try to see if there was a way to reach these people.

“We call this ‘The Garden’” an orderly explains to Sayer about the ward on which his patients reside. “Because all we do is feed and water them.” Everybody, even the doctor who had first identified encephalitis as the cause of the disabilities (Dr. Peter Ingram, in the movie), figured that there were no longer people in those bodies to reach. Sadly, I still see the "feed and water" perception about people with profound disabilities from time to time.

I’ve spent the better part of an hour now looking for a website that I found just after the last time I watched “Awakenings”, several years ago. I haven't been able to find it, but I remember being very moved by it. The young woman who wrote it had lived with profound disabilities and been unable to communicate for over half her life, and then become able to; her thoughts about how frustrating it had been to live in a world where everyone assumed that she was just an empty body with no awareness of her surroundings were eye-opening and heart-breaking.

Connecting with People with Profound Disabilities

I absolutely believe that even if all evidence is to the contrary, we have to assume that people are “in there”, and that it’s incumbent on us to, as much as possible, to figure out how people communicate and how to communicate with them. I don’t know any people with the specific brain damage that the people in "Awakenings" lived with, but I know plenty of people with profound disabilities that are totally reliant on others for their care, that can’t coordinate their limbs to the point where they can propel themselves in a wheelchair or reposition if uncomfortable, and don’t communicate in any traditional way. I’ve had discussions with people (discussions that have broken my heart) who don’t believe that people living with profound disabilities should have been allowed to live at birth.

The thing is, people with profound disabilities *do* communicate; I’ve worked with several of them, and I’ve seen it. One used to purse her lips suddenly as I helped her to eat, which I took to mean, “No more.” Another cried when certain types of music were played around him. And Frances, who I called “my dancer”, loved to sit on the couch in her family’s living room and stretch her long, graceful arms over her outstretched legs. She’d move her arms forward, and open them up, and turn her torso to stretch further…bring her arms together again and peek at me from underneath one of them, smiling widely. Sometimes I’d hold her hands as she moved, so that we did a dance together.

She loved to move like this; she didn’t even need music. I loved watching her.

Assume Someone is "In There"

In “Awakenings”, the Peter Ingram character says that the virus that had turned Sayers’ patients into statues “did not spare their higher faculties”. When Sayers asked him how he knew this, Ingram says, “Because the alternative is unthinkable.”

It’s more “unthinkable” *not* to consider the alternative, and potentially leave a person who wants to engage with the world without the opportunity to do so…when it may be entirely possible for us to help facilitate that engagement. This is one time when it’s *always* okay to assume – assume that someone’s “in there”, and that there’s a way to reach them.

Friday, 17 June 2011

I didn’t intend to write about the rest of “Finger-Spelling” quite so soon…but the piece that I posted yesterday about my experience of physical restraint in a hospital got some strong reaction, and I feel like I need to finish what I want to say about it.

A couple of things, though…

Nurses Rock

First, I’m over what happened to me that day, and what I’m going to talk about today. Neither story paints nurses in a good light. I had three bad experiences with nurses in seven months; the rest of the time I found that my nurses were amazingly sensitive and dedicated, despite being chronically overworked and assigned far too many patients on a shift. I saw patients hurl a lot of abuse at them…I even apparently yelled at a nurse one night to just leave me alone because I was never going to going to walk again anyway, why was she still in my room, get out, etc (I have no memory of this.)…and some days I wondered why they’d ever wanted to be nurses. I have a tremendous amount of respect and gratitude for the nurses who took such good care of me (and of other family members when they’ve been ill).

Ask, Don't Assume - Kathie Snow Rocks, Too

Secondly, I want to link to this article by Kathie Snow, of the Disability is Natural movement, because it explains so well the point that I’m trying to make by telling these stories of being restrained in the hospital: If we simply try to communicate, listen well, and don’t make assumptions, we have a much better chance of truly understanding a person’s needs and responding to the person appropriately.

It’s an excellent article for *everybody*, not just people who work with disabilities. I’ll use the story of my second physical restraint experience to illustrate how important it can be to ask, not assume.

A Bad Headache and a Grumpy Nurse

I was in what they call the Neural Step-Down unit at this point. I had a roommate, who’d also had brain surgery, but I didn’t get to know her very well; we were both sleeping a lot, and she got to go home long before I did. One night, not long after the surgery, I couldn’t get to sleep because my head hurt too much. I felt like someone was trying to open my head with a screwdriver.

My nurse was already annoyed with me. My call button wasn’t working, and it had been going off all by itself all night. I kept trying to tell her that it was broken, but she didn’t seem to believe me. When I actually did call her in to see if I could get more pain meds, she very shortly told me that I’d had all that I was allowed to have and I would have to wait.

Now, the unfortunate thing about the stroke-affected mind is that, especially at first, it doesn’t realize what’s happened. I’d have certainly fallen if I’d tried to stand up, but in my mind I could still walk. I decided that if I couldn’t have any more pain meds, I needed to take a walk to clear my head. So I sat up in bed and tried to take down the bedrails.

The nurse happened to be passing by, and saw what I was doing. She was furious. She talked about how she had too many patients to be constantly keeping an eye on me, making sure I wasn’t trying to get out of bed – as she tied my wrists to the bed. I cried myself to sleep.

Later, another nurse took the restraints off. I told my sister Rachel what had gone on when she came in the next morning. I don't remember this, but my roommate told us that I'd stated explicitly the night before to the nurse that I'd not wanted physical restraint of any kind used on me. Rachel talked to management about what happened. They apologized that I'd been upset, and that she'd been upset.

I got told this later. Rachel apparently said, "Upset? You haven't seen upset yet. My father's going to hit the hospital in about 45 minutes and then you'll see upset."

Dad talked to management when when he arrived, and I never saw that nurse again; I believe they sent her to another floor. But I was so terrified about seeing her again the next night that Dad spent the night in the waiting room, in case something happened.

The Point

I understand that the nurse was concerned for my safety and likely feeling stressed out by the demands of the shift. But I truly believe that if she’d sat down with me for two minutes, and listened to my reasons about why I’d been trying to get out of bed…explained that I’d fall if I tried to walk around… and said she’d try to get more pain meds ordered, even if she’d had no intention of doing so…I’d have stopped trying to get out of bed and just cried myself to sleep, without the trauma of physical restraint. That two minutes of listening with no assumptions would have made all the difference.

I’ve taken a lot away from those experiences in the hospital. Knowing what it feels like to be restrained myself has really shaped my beliefs on the use of physical restraints (restraint of any kind, actually) in vulnerable populations – it should be the last resort in a situation. It’s also changed how I view “problem behaviours” in the people I've worked with. If a person doesn’t communicate easily, I ask myself, “What could be going on that’s bringing this out? Is he too hot? Is it close to a mealtime and she needs to eat? Is there someone around that he doesn’t like?” Even in people who are non-verbal, you start to observe patterns once you get to know them…and there are all sorts of “listening”…

But I digress. For those of you who found the restraint stories difficult to read, I apologize. I posted them hoping that we could take something positive away from them about assumptions and communication and listening (and link to Kathie’s fabulous article), but I forget that people sometimes find that sort of thing upsetting…

I'm not around much this weekend, so I'll see all of you on Monday. Enjoy your weekend...thanks for making this such a great first week!

Thursday, 16 June 2011

My Brain AVM Story: In the Recovery Room

After the open-brain surgery to fix my brain AVM, I awoke in the recovery room to find myself still intubated. They didn’t want to extubate me, my father explained to me, because they might need to go back in and see if they could get they could get a little bit of brain AVM that they hadn’t been able to get the first time. Did I understand that? Blink twice if I understood.

I understood. I blinked twice.

Blink twice if you give consent for them to do that.

Blink. Blink.

I understood that this brain AVM experience might not be over.

Plastic on my Tongue

So I lay in the recovery room with my Dad and my sister, Rachel, with a tube down my throat. I knew that the tube was a necessary evil; we’d been through this with my mother a couple of years ago. But I didn’t know from our experience with Mom that when there’s a tube in your throat, there’s also an annoying piece of plastic pressing down on your tongue. I couldn’t get my tongue around it and I really wanted someone to move it.

But when my hand went toward my mouth, the nurse assumed I was going to rip the tube out. “Don’t let her do that!” she said sharply, and suddenly Rachel had grabbed my arm. “You need to leave that in,” she said.

I don’t remember what I was thinking. I was probably on auto-pilot. My brain, in its post-surgery wisdom, decided that I should start finger-spelling to my sister. After all, we’d both been Brownies. She should know what I was doing.

“Plastic on tongue. Move it.” Was what I meant to sign. I got through “Plastic” before Rachel started shaking her head.

“I don’t know what that means,” she said.

My heart sank. I just had surgery and still have some brain AVM in my head and I remember how to finger-spell, I thought. Why don't you? I scanned the room for the nurse. She appeared to be helping someone else. I thought I had some time. I tried to open my mouth, to point at my tongue.

“We’re going to have to restrain her,” the nurse said, suddenly. She'd come out of nowhere! The next thing I knew, my wrists were being tied to the bed.

"They'll Just Put It Back In"

I wasn’t done yet, though. I wasn't even thinking about the news that there was still some brain AVM in my head and that I might need more surgery. I just really, really, just wanted someone to move the piece of plastic off my tongue. Convinced that I could make Rachel understand if she’d just watch my finger-spelling carefully, I managed to work one of my hands out of the restraints.

The nurse caught me immediately. “Oh no, you don’t,” she said. I didn’t have a chance of getting out of the restraint this time, I soon realized.

“You can rip it out if you want,” Rachel said, her eyes sad. “But they might need to get the rest of the brain AVM today, so they’ll just put it back in.”

(Looking back now, I realize that I had every right to insist that the tube be taken out…not necessarily by me, but that’s another story. I’d already consented to having another procedure done to get the rest of the brain AVM if necessary, but I could have changed my mind about that at any point and rendered the tube unnecessary, unless there was a reason for keeping it in that I wasn’t told about. But if l knew that at the time, I wasn’t thinking about it.)

The Frustration of Not Being Able to Communicate

That was the first time I was restrained in the hospital. If I’d known how to communicate what I wanted, I sure would have, because I didn’t have any intention of ripping that tube out of my throat by myself, even with the fearful prospect of more surgery looming over me, and there really was no reason to restrain me. I don’t remember what happened after that, but I imagine that I went to sleep fairly quickly. I was, after all, just out of over 12 hours of brain surgery.

The second time I was restrained was a little more dramatic; I’ll tell that story another day. But here’s something to think about: If you had a disability that left you unable to communicate with people (or unable to communicate effectively with people), what behaviours do you think the frustration would drive you to? What assumptions do you think people might make about how are you in general based on those behaviours? Would those assumptions be true?

-------

Oh, I do remember something else about that day…my father said, “None of your mother in you, is there?”

That’s probably one of the nicest compliments I’ve ever gotten.

Afterthought: They never did go back in for the brain AVM. That is a story for another day.

Wednesday, 15 June 2011

I’m expecting to ruffle some feathers with this one. I'd like to talk a bit about the Special Olympics.

Special Olympics?

My first exposure to Special Olympic sports was with a bowling team, where I was a volunteer coach. Many participants needed a great deal of support and coaching to get, by typical standards, anything approaching a score on the low side of average. Others didn’t need as much support to get skills that were average or even a little above.

And then there were a couple of participants who consistently got either strikes or spares on almost every frame, with almost no support or coaching, week after week.

And week after week, I’d ask myself, “Why are they in Special Olympics? Why aren’t they competing in a regular league, with ability like that?”

Special Olympics: Positives and Negatives

I see the merits of the Special Olympics movement, and it’s not that I don’t support what it does. I just think that it needs to operate in tandem with other opportunities for people with intellectual disabilities to participate in sports activities in their communities. There needs to be options. Because I *don’t* agree with the idea of pigeonholing someone into a particular sphere of competition based on a cognitive measure rather than their potential to train and do well in event.

I’d rather let people make their own choices about athletic competitions. I think that, for some people with intellectual disabilities, being involved in the Special Olympics movement works well. They get a chance to compete among peers with disabilities, they have a chance to win that they may not have in competition with their peers who don’t have disabilities, and being able to participate in a sports competition gives them something they can use to relate to their peers in general. They learn lessons about good sportsmanship and social skills, and they experience the benefits of participating in sports.

However, the Special Olympics movement came about during a time when people assumed that people with intellectual disabilities are most comfortable when they’re associating with other people with intellectual disabilities. Now, there’s no question that some are; why wouldn’t they be? Many would have experiences in common, relate to each other on a similar cognitive level, and potentially receive the same supports. In that sense, they truly are peers, and there’s not a thing wrong with that…if that’s what they want.

An Argument for Options

Because there are just as many people with intellectual disabilities who prefer not to think of themselves as such, that don’t want supports that group them with others with these disabilities, and that would much rather spend time with friends and family who don’t have disabilities. And I get concerned sometimes that people with disabilities who don’t express that preference may not be doing so only because they haven’t had a lot of opportunities to see what those relationships with people without disabilities could offer: they’ve been institutionalized for a large part of their lives, or (for the youth) in Special Education classes all through school. They haven’t done a lot (if any) extracurricular or community activities, and they don’t really know what people without disabilities do in their friendships, activities, and social roles.

If the Special Olympics bowling is all you know, how can you make a choice about whether you want to do something else in the word of sports? Maybe you’d actually prefer league bowling, but if you’ve never had the option of participating in any sports activities but Special Olympics, how would you know? And how would you ever know if you never get some sort of opportunity to try community play?

The Community's Role

Of course, sometimes intellectual disability creates social barriers to an individual participating in a “normal” sports competition. Sometimes behaviours are difficult to understand, or aren’t socially appropriate; sometimes there’s an issue with language expression or comprehension; sometimes the person may not understand the rules and need to be reminded. But then again, there are a whole lot of people without any sort of disability with those problems that manage to get along in the community!

Making sure that everyone has a place and the opportunitiy to participate takes some commitment and effort from us, too. But everybody benefits, in the end. And even if everything that we try doesn’t work, it all teaches life lessons; it all teaches us, as they say in the Special Olympics movement, “to be brave in the attempt”.

Tuesday, 14 June 2011

Invisible Disabilities in Society

Someone left a comment about invisible disabilities the other day, and it really got me thinking.

In both my career and my personal life, I’ve worked with a lot of people that, unless you spent a bit of time with them, you wouldn’t know that they’re living with disabilities. Some of them have had very mild intellectual disabilities; hearing or vision impairments; developmental disabilities like Asperger’s Syndrome; mental conditions like Obsessive Compulsive Disorder; or learning disorders or ADD/ADHD.

We call these sorts of disabilities invisible disabilities. All you may notice, if anything, is that the person seems a little “different”, but nothing you can really put your finger on. I've got some invisible disabilities myself.

Society can be just as inaccessible for people with invisible disabilities as it is for people with physical disabilities. Even a grocery store can be pretty daunting if you don’t know how much money to give the cashier, or your vision is bad and you can’t read the signs, or you can’t hear what the cashier is trying to say to you, or you’re totally overwhelmed by crowds or by the idea that idea that people have touched things before you, or you thought that you had a list but you left it at home along with your bank card because you find it difficult to stay organized…

Simple Ways to Increase Accessibility for People with Invisible Disabilities

Fortunately, there are many ways that people in the retail and service sector can make places like stores and hotels more comfortable places for people with invisible disabilities, and it all really boils down to good customer service. Simply asking when someone gets to the cash register “Did you find everything that you need today?” gives a shopper a chance to ask for help without having to say, “I can’t find the ice cream that’s on sale because I can’t read the cartons.” Stepping up to the person who’s standing in the aisle looking lost and asking “Can I help you find something?” accomplishes the same thing. You don’t have to know why they’re looking lost and they don’t have to tell you – whatever the reason is, if they need help, there’s an opportunity to get it.

Many large corporations offer disability sensitivity training. Employees learn about the signs that someone they’re serving may have an invisible disability and the best ways to make that person feel comfortable. If you can’t find a course in your area, Google “disability sensitivity training” to find several downloadable resources. This sort of information is particularly useful for businesses, but it doesn't hurt any of us to know about the basic concepts in disability sensitivity; it's another, really easy way to make society easier to navigate for all of us.

Monday, 13 June 2011

Thanks to dedicated staff in Canada's health care system, I am both a brain arteriovenous malformation (AVM) *and* a stroke survivor. I'm a very lucky person, to be where I am right now.

My Brain AVM Story

I sometimes feel like I spend a lot of time defending Canada’s health care system. I know that it’s not perfect. I can tell some stories of some real atrocities that have happened to people I love at the hands of the Canadian health system.

But it was there for my mother, right from the time that she was diagnosed with cancer to her death. She was treated, as far as we as we could tell, to the best of the doctors' ability, with respect and dignity. We were treated with respect by hospital staff as well.

The medical system has always been there for me as well, in spades. Like I said, I've been very fortunate.

I had my first stroke in the middle of a job interview in British Columbia. I was twenty-two at the time. I was rocking that interview. They wanted a coordinator for a symposium on youth violence, and I could tell that they liked me. I ended up getting the job, actually.

But it was not to be, because in the middle of the interview I got an incredible headache that came on like a train – fast and forceful. “So this is a migraine,” I thought, faltering over my words. I had to stop and explain what was happening. Someone on the panel gave me some Tylenol, and I managed to finish the interview, but at the end of it they wouldn’t let me go until I’d promised to go to straight to the doctor.

I didn’t protest. I could feel my neck getting stiff. “So this is meningitis,” I thought.

I’d only been in British Columbia for a couple of months. I’d just put my application for BC health insurance in the mail that morning. I walked into the town health clinic, put my Ontario health card down in front of a receptionist who didn’t know me from Adam, and said, “I think I have meningitis.”

Five minutes later, I was in a doctor’s office.

Five hours later, after an ambulance ride to the nearest city, I was checked into the nearest hospital. I’d had a CT scan and a lumbar puncture and I was scheduled to be transferred to a larger, more specialized hospital in the morning.

Five days later, I’d had an angiogram and I’d had been diagnosed with a brain arteriovenous malformation, or brain AVM (check the Glossary on the About Me page for definitions of unfamiliar terms). I had an appointment in a brain AVM clinic in a Toronto hospital, and I was cleared to fly home to Ontario.

Five months later, I’d been seen in the brain AVM clinic in Toronto Western Hospital twice. The doctors had decided on a course of treatment based on another angiogram: embolization to reduce the size of the brain AVM, and then a craniotomy. The surgery hadn’t gone as well as they’d hoped: A small segment of brain AVM could not be treated, and I’d had a stroke that had significantly compromised my left side. My treatment team was arranging in-patient rehabilitation at Penetanguishene General Hospital, a facility closer to home, so that my father wouldn’t have to do so much driving. They were just waiting for seizures to stabilize before they sent me.

The rehabilitation hospital kept me for as long as they could, and then sent me to Ottawa Rehabilitation Centre, which kept me for as long as they could. My in-patient rehab was seven months in total. I still see a seizure specialist (and, because I didn’t like the first one to whom I was referred, I asked if I could switch, and I was accommodated).

When It All Comes Down to Money

There’s a chance that I wouldn’t be here if the medical system hadn’t been here to support me the way it had. My family would not have been able to afford my brain AVM surgeries, let alone my aftercare and rehabilitation, if we’d lived in country without universal health care. As I said, the system isn’t perfect. I really feel for people that have had a bad outcome because they've been put on a waiting list or because they've had to sit in an ER too long. That absolutely shouldn't happen.

But I can’t imagine living in a country where people sometimes go without treatments that they need simply because they can't afford it.

Sunday, 12 June 2011

Disability Terminology: A Matter of Personal Preference

My friend Janet, who has done a lot of work with people with disabilities, does not like the word “disability”.

I’ve come across this before. For a brief time I was talking to a guy on a dating site whose medical history was similar to mine: stroke at a young age and trying to regain as much function as he could. He couldn’t believe that I was okay with saying that I had disabilities.

I had to make an important distinction at that point. I don't consider myself disabled, and you won't ever hear me describe myself as such. I have some disabilities, yes, and I use aids to compensate for the deficits caused by those disabilities. (To me there's no argument that having a left side as compromised as mine, even now, is a disability that produces functional deficits; let's call a spade a spade.)

I do understand that other people don't like that particular disability terminology. To them, I stress that considering myself a person living with disabilities doesn’t stop me from doing what I want to do. I wanted to take ballet, so I took it; I couldn't get anywhere near technically masterful even at the basic exercises, but what what I did resembled ballet enough that I felt good doing it. Same with the yoga classes that I took last summer. I was never going to be a master in either of those things anyway, so why not just take the classes and enjoy them?

But I digress. My friend on the dating site didn’t like the fact that he “has disabilities” because he wasn’t ready to have a word with negative connotations apply to him. Janet doesn’t like the word because she thinks that the “disability mindset” is too hard to get out of.

“I prefer to call it a ‘bump in the road’”, she said. “It’s jarring, yes; it’ll shake you up a bit. Maybe enough to even cause some damage, so that you have to ask for help. But it shouldn’t throw you off track forever. It shouldn’t stop you from moving forward. But “disability”? That’s a hard one to shake. You can get stuck there for a lo-o-o-o-n-g time.”

Disability Terminology: Making Compromises

My resistance to moving away from “disability” likely comes from a certain degree of institutionalization. I’ve got a lot of training that says, “We say “disability” because research has shown that this group prefers it”. On the other hand, I've got a lot of experience that says that people with disabilities don’t like thinking of themselves as having disabilities, or being grouped together with others with disabilities. I understand Janet’s thinking, and actually really like it, but “disability” is a word that comes up so often for so many of us that live with it that I think we do have to find a way to reconcile ourselves with it...if for no other reason that when I understand my disability, I can better express to people what I need.

I worked with several people with mild intellectual disabilities who, in discussions of disability terminology, responded well to this line of thinking about how they might view "disability" more positively:

Your disability means that your brain works a bit differently than most peoples’, just like my disability means that my arm and leg work differently than most peoples’.

It doesn’t make you any worse or any better than anyone else, and it's only a part of what makes you *you*. There's much more to you than your disability.

There’s no shame in asking for help when your disability makes it difficult for you to do something. The real shame would be if you were missing out on things you enjoyed because you were scared of what people would think because you asked for help.

The people that make fun of you for having a disability or asking for help aren't people that you want to know.

This kind of work is ongoing. Sometimes it takes a long time for people to see that they don't need to be ashamed of who they are. Ideally, disability terminology should provides a way for people to express confidence in themselves as people with disabilities, without the stigma attached to current terminologies.

Disability terminology should also be a teaching tool, not something that causes further division. Ultimately we’re all just people with differences, and it's not in any way a bad thing. But society's still not at a point where we're consistently taught that, sadly.

Saturday, 11 June 2011

It's been a loooong night, but I've finally got this beast up and running! Thanks for stopping by!

So this is a blog about disabilities - all kinds of disabilities - and whatever interests me about them enough to write something (which is quite a bit, you'll find; I've been involved with people with disabilities in one way or another for over half my life)

I’ve been living with physical disabilities myself for 11 years now. I walk with a cane (mainly for balance and speed now, but there was a time when I needed it just stay upright), my left arm’s range of motion is compromised, and my left hand is almost useless.

All of this happened after a stroke when I was 22. Learning to live with the after-effects wasn’t easy. The effects of the stroke were fairly severe, and I had to learn how to walk again. My left side was my dominant side, so I also had to learn how to use my right hand to write, eat, and perform all the other tasks that my left hand used to do. I also had to start to figure out how to perform one-handed the tasks that generally take two hands to do.

I did a lot of physiotherapy and occupational therapy. Several months of it were done as a patient in rehabilitation hospitals, but I continued on an out-patient basis in a local clinic in my town once I left the hospital. Some days I really, really didn’t want to do it, but I also really, really wanted some semblance of the life that I used to have back, so I kept at it. Eventually I got to the point where I didn’t need the wheelchair and could walk with two canes, then to where I could use one cane, then to where I didn’t need the cane inside, and finally to where I only really need the cane for speed and balance. I barely notice it anymore when I walk; it’s an extension of my arm. I frequently leave it places and have to go back and look for it.

My arm and hand haven’t regained nearly as much function as my leg, but, again, it’s not something I notice anymore. After eleven years of learning to live one-handed, I can do pretty much everything I need to do with one hand. I think it makes people a little nervous sometimes to see me carrying four plastic bags of groceries on one wrist, with my cane hooked over my arm and a case of 12 pop tucked under my elbow, but I live on my own – if I don’t find a way to do something, I either have to get someone to come help me (and I just don’t like bothering people unless it’s really necessary), or I have to find some way to do it myself, or it doesn’t get done. For most things that I have to do on a day-to-day basis, I just fall into my one-handed ways automatically, and it’s no big deal.

Acquiring disabilities has been a huge eye-opener – and a huge heart-opener. I’ve been volunteering with people with disabilities since I was 15 years old, and I work with teens with disabilities now. My experience has profoundly changed the way I relate to them, and how their experiences touch me. I've written about it before (more on that later), but I need to get back to it, and hopefully this is a good place to do it.

Please get in touch with me via Facebook, Twitter, or girlwiththecane@gmail.com if you have any questions or comments...you can leave comments on the posts themselves too, if you didn't know that already. I love hearing from readers!